Autism Speaks Global Autism Public Health Initiative seeks to partner with communities worldwide to increase awareness and access to autism services
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Global Autism Advocacy Leadership Network
Over the last decade, Autism Speaks and its partners have helped improve the quality and reach of autism services in much of North America and Western Europe. Autism Speaks Global Autism Public Health (GAPH) initiative seeks to replicate such success in underserved communities worldwide.
This work dovetails with Autism Speaks’ international priorities of increasing global awareness, services and research collaboration. In particular, GAPH supports the creation of self-sustaining public health programs and research networks. It recognizes that differences in resources, infrastructure, culture and priorities demand customized action plans. It helps meet these challenges by engaging governments, grass-roots organizations and local families as partners in developing action plans for their communities, nations and world regions.
Currently GAPH has active partnerships, programs or exploratory activities in 42 nations.
The knowledge gained from these partnerships has great potential for improving the future for all who struggle with autism spectrum disorder (ASD) – in North America as well as abroad. Many lessons can be learned from creative approaches to delivering screening and services in underserved nations. Indeed, the need for greater awareness and access to high-quality services remains a major priority for helping families in underserved communities in the United States. One of GAPH’s first research grants aims to improve autism screening in rural Colorado schools. Other studies are taking place in Albania, Ethiopia, India/Pakistan, and Taiwan. (For project descriptions of all GAPH research grants, click here.)
GAPH Goals
In assisting partner countries, GAPH has three guiding goals:
1. Increase public and professional awareness of ASD.
Autism Speaks’ North American awareness campaigns have dramatically increased public and professional recognition and understanding of ASD. At the same time, Autism Speaks has furthered the development and passage of federal and state legislation that enhances research and services. Autism Speaks is eager to share our strategies and resources for adaptation by other nations. Our expertise and resources can serve as vital starting points for global partnerships.
For example, we have helped develop culturally sensitive advertising campaigns and educational materials. In all cases, we have done so by working with local families, teachers and public health administrators.
2. Enhance research expertise and collaboration.
Accelerating the pace of autism research requires collaboration. By working together, researchers can share ideas to ensure high quality results and overcome common challenges. Such collaboration between researchers internationally can further lead to new and exciting research in places around the world and in populations different from our own. However, research must be tailored to meet the cultural needs and practicalities of different regions, nations and communities. Autism Speaks is tackling this challenge on several fronts.
Autism Speaks’ International Autism Epidemiology Network (IAEN) promotes collaborative research through the sharing of scientific information and methods. Currently, IAEN comprises some 80 investigators from more than 30 countries. Importantly, scientific networks such as IAEN provide ideal platforms for training the next generation of autism researchers.
3. Enhance the delivery of early diagnosis and treatment by providing training and expertise.
Effective screening and intervention involve close cooperation between professionals and families. On a global level, they also require sensitivity to differences in culture, values and perspectives.
Autism Speaks can provide partner countries with a wealth of information and training based on scientifically tested “best practices.” The actual practices can then be vetted and adapted by local parents, health professionals and teachers. Autism Speaks offers a wealth of information and tool kits for families and community members to better understand and to improve the lives of affected individuals (see Family Service Tool kits below). Further, Autism Speaks works with experts to deliver training programs in evidence-based autism intervention programs at community, family, and professional levels.
In all cases, GAPH fosters self-sustaining systems for training providers and delivering services at community, national and regional levels.
GAPH Regional Partnerships
Just as collaboration at the community level is vital for GAPH to be successful in a single country, collaboration between countries can lead to rapid change at the regional level. As such, GAPH strives to develop regional networks around the world that foster awareness and to improve training and collaboration between countries. These networks bring together national ministries of health, education, social welfare, and others around a pledge of common goals such as:
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Raising public and professional awareness of autism - Providing information and resources for parents and professionals
- Collecting public health information to better identify affected individuals and their needs
- Conducting professional training in diagnosis, early intervention and medical care
- Providing evidence-based services for adults as well as children.
Two such regional partnerships have already taken root. Each grew out of an earlier GAPH country partnership.
* In December 2010, Autism Speaks joined the Albanian Children Foundation, five ministries of health (Albania, Bosnia and Herzegovina, Croatia, Macedonia and Slovenia) and the World Health Organization (WHO) to launch the South-East European Autism Network (SEAN). To date, there have been two SEAN meetings, in Albania and Slovenia, and the Network has grown to eight countries (adding Bulgaria, Kosovo and Montenegro). The third meeting is scheduled for spring of 2013 in Sarajevo, Bosnia & Herzegovina.
* In 2011, Autism Speaks, WHO and the government of Bangladesh organized an international conference on autism and other developmental disorders in South East Asia. The conference marked the launch of GAPH-Bangladesh and much more. Attending this historic conference were Sonia Gandhi, president of the Indian National Congress; Sheikh Hasina, Bangladeshi Prime Minister; her daughter Saima Wazed Hossain; Sri Lankan First Lady Shiranthi Rajapaksa; and Ilham Hussain, wife of the Republic of Maldives vice president. Attendees agreed to organize the South Asia Autism Network (SAAN). They also adopted the “Dhaka Declaration,” which brings attention to the unmet needs of millions of individuals with developmental disabilities including autism.
The first annual SAAN meeting is scheduled for January 2013. It will be hosted by Sonia Gandhi and the Ministry of Health and Family Welfare of India, in New Delhi. The Indian health ministry requested Autism Speaks to serve as a technical advisor. The meeting will allow the region’s government officials and policy makers to share experiences and strategies. It will also provide a forum for local and international autism experts and advocates to set SAAN objectives and identify partnership and development opportunities across the region.
Global Autism Advocacy Leadership Network
In April 2012, Autism Speaks hosted the first annual meeting of the Global Autism Advocacy Leadership Network (ALN), in New York City. Attendees represented countries and regions including Albania, Aruba, Bangladesh, Brazil, Hungary, India, Japan, Mexico, Philippines, Saudi Arabia, South Africa and the U.S. (Read more about the inaugural meeting here.)
The ALN comprises advocacy organizations united in their efforts to promote greater autism awareness and services worldwide. The ALN’s guiding goal is to develop and mobilize a global network of autism advocates through in-person and virtual meetings.
At the 2012 meeting, each group shared its organization’s mission, accomplishments and challenges. The people of Aruba, for instance, speak 99 languages across their small island. Clearly this makes distributing information a challenge.
Many countries struggle with the challenges of limited government resources and widespread poverty. Isolated villages and large expanses pose yet another challenge to population screening and access to treatment. ALN meetings also bring inspiring reports on how member groups are making progress, including the following:
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Within the last few years, Albania has mounted a nationwide awareness campaign and opened a state-of-the-art center for providing autism diagnosis and treatment. - Over the last two years, every Army base in Bangladesh has opened a school for children with autism.
- In India, Autism Speaks has assisted in the translation of important diagnostic tools.
- In the Philippines, Autism Speaks is providing technical assistance to launch a national epidemiology study.
- In Saudi Arabia, government agencies and foundations have invested heavily in autism research and services, even developing a special healthcare card to speed access to services discounts for those on the autism spectrum.
- Hungary, one of the few European countries with a national strategy plan for autism, has 500 schools and 12 residential homes for individuals with autism.
ALN participants are also actively engaged in raising global autism awareness through Autism Speaks Light It Up Blue campaign.
Translated and Adapted Family Service Tool Kits
Autism Speaks has worked with autism experts and families to develop a series of tool kits that guide families through many of the challenges they may face in caring for a loved one with autism. As a part of Autism Speaks Global Autism Public Health Initiative, a growing number of these tool kits are available for translation and adaptation to local languages and cultures. For information, click here.
Autism Speaks has also developed World Autism Awareness materials in a variety of languages. These materials include the “Talking to Parents about Autism Action Tool Kit.” For a full listing and links for free downloads, click here.
Getting Your Country Involved
Are you part of a group wanting to increase autism awareness and services in your country or world region? Please contact us at science@autismspeaks.org.
News and Blogs
For more information and perspective, please see these related news stories and blogs by our science staff and affiliated researchers:
*NYC Korean Community Autism Project
*Understanding Autism: Toward a More Inclusive World
*Autism Researchers, Practitioners and Families Meet in Galway, Ireland
*Inspiration and Progress on Autism in Southeast Europe
*Lives Changed and Lessons Learned in South Asia
*Early Intervention Comes to Saudi Arabia
*Investing in Research for Today's Families
*Special Issue on Global Autism Research
*Spouse of UN Secretary-General Promotes GAPH in Serbia
*Bangladesh Pioneers Autism Public Health in South Asia
*First Lady of South Africa Welcomes Autism Speaks Staff and Advisors
